TMJ Friends

Eli Lilly announced today that the FDA has approved Cymbalta for the treatment of fibromyalgia!!

Cymbalta joins another medication, Lyrica, as the only medications approved for this disease.  This is also the second approval for the use of Cymbalta for pain, the first being diabetic peripheral neuropathic pain.

With fibromyalgia, patients often find that a multi-disciplinary approach works best, and what works for one, may not work for all.  This approval is a huge step forward, because another choice in medication improves the chances that even more patients will find relief.

With approximately 5 million people diagnosed with fibromyalgia in the United States, this approval is definitely good news for many!

Research reported at the American Pain Society annual meeting shows that, contrary to widespread beliefs, less than 3 percent of patients with no history of drug abuse who are prescribed opioids for chronic pain will show signs of possible drug abuse or dependence.

Read the rest at Science Daily.

One of the most common questions I am asked regarding my joint replacements is if I would do it again. That is a hard question, because I feel as though I had very little choice. My joints were fused, and I could either live with extremely limited function and a high pain level, or I could take the chance on the total joint replacements and gain both pain relief and function, or at least one of the two.
They say hindsight is 20/20. Considering the small gain in function and limited pain relief, I would NOT do it again.

I don’t think the small things I gained were worth the pain, effort, travel, and money.

I am also very limited in what can be done now that I have the joint replacements. I am very young, and because of this will end up having many more joint replacements.
Very few doctors know how to deal with the chronic pain and limited function that I have as a result of over 10 TMJ surgeries and nerve damage.

If and/or when the joint replacements fail, I have no options other than new joint replacements. If I become allergic to the materials in the joints, I have no options.

I do believe TMJ total joint replacements have their place in TMJ surgery. Some patients are good candidates for this procedure and do very well for years. There are patients now that have had joint replacements for over 15 years and are doing very well. However, these patients are few and far between.

The lesson here is to make sure you understand that total joint replacements often do NOT relieve pain.  If the major reason you are having the joint replacements is pain, you might be better off in long term pain management.

Surrounded - Photo originally uploaded by Harry_S

At the time of diagnosis, often times a patient becomes very emotional, or very detached (of course there are degrees in between). Many people tend to take their diagnosis at face value, and place their treatment in the hands of a doctor. They are often too emotional to take charge.

The detached will start forming a game plan. They research, ask questions, and become an active participant in their treatment. They also tend to unconsciously put emotions on the back burner. They are so incredibly busy “staging the battle” that the thought of dealing with emotions doesn’t even cross their mind.

As part of “staging the battle”, many patients also rally the troops. Patients find themselves surrounded with family and friends. All of them relaying stories about their great aunt, Uncle Joe, and their cousin’s boyfriend who went through the same thing and were just fine. Sometimes, the opposite is true, and people will shy away because they do not know what to say or how to act. This is a very precarious time, because the way you respond to your family and friends is the way they will respond back to you when you need them the most.

It seems that in the diagnosis stage of an illness, there is a lot of confusion. It’s a little like putting together a puzzle. A puzzle that is written in medical terms, and the lay person does not understand it. Everyone is hearing terminology that they have never heard before, and nothing seems to make sense. Once those pieces of the puzzle start fitting together, there comes a sense of acceptance.

The treatment phase of an illness is the busiest time. This is when the patient’s support team becomes invaluable. The patient has doctor visits, possible surgeries, children to take care of, meals to cook, and medications to take that may not allow them to do these things. New issues arise such as how much to tell the family. The consequences of not telling them the whole truth may create new problems later on. Patients may feel the need to force themselves to do too much, which not only delays the healing process, but could also give off the impression that they are doing much better than they actually are.

Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them. As a result, the patient might find themselves telling people less and less of what is happening, causing the people around them to back away.
For some, treatment may go on for years, and dealing with it is a delicate balancing act.

After the so called “cure,” the “troops” start backing away, going back to their regular lives. All the emotions the patient unconsciously left on the back burner during treatment are now coming out ten fold. This is the point where the patient discovers the toll that the illness has taken on their life and their family.

Before and during a treatment, the patient has so many people by their side - doctors, family, friends.. but afterwards, they can be left feeling isolated and alone. Add that to the fact that the so called “cure” might not be, and you have a recipe for major depression. Life does not necessarily resume. There may still be medical issues that require treatment, and there is always the possibility of failure.

Dealing with an illness of any kind requires a multi-faceted approach. The patient must be treated as a whole including mind, body, and spirit.

My story started almost a year ago when I went to the oral surgeon to have a lesion removed from my tongue. I am 40 years old. The oral surgeon told me my upper wisdom teeth were rotted and I should have them extracted. They were fully grown in, not impacted and I had never had any trouble with them, but truth be told, I was afraid to have the lesion remove from my tongue while awake so I agreed to have the wisdom teeth done so I could be but to sleep. It turned out the lesion was pre-cancerous. I vaguely remember the OS saying he had to really wrench one of the wisdom teeth out. That is what started by journey to hell. Several days later I returned to the OS complaining of pain in my jaw. He said I must have a dry socket and wrenched my mouth open to put some medication in the socket left by the removed tooth. He got aggravated with me because I could not open my jaw wide enough so he could do this easily. There was no dry socket and the medicated gauze promptly fell out. Several days after that I returned again complaining of continued pain in my jaw. He put me on valium and that was the first time I heard the word TMJ.

He too felt it was TMJ and I had my first of 3 arthrocentesis surgeries last November. It was horrible. My pain continued and I could not close my mouth for a week. I had 2 more arthrocentesis’ done in February and April. I quit my job and dropped out of school. I was on constant pain meds and every muscle relaxer out there. Nothing helped. I had an MRI done which showed “nothing conclusive”. By now my opening ability was between 7 and 10 mm, I could eat strictly soft foods and was in pain around the clock. My primary care doctor started treating my like some type of drug seeking junkie.

Finally I had arthroplasty in June. My doctor found bone spurs which he filed down, recontoured my jaw line because it did not “look right” and sewed my disc in place. Recovery was painful.

I still continued to have constant pain but my opening ability increased to 32mm - WOW!

I had trigger point injections because I started having severe headaches and my muscles seemed immune to any type of muscle relaxer. A horrid grinding noise started in my jaw whenever I eat or move my jaw from side to side. I was in physical therapy following surgery which considerably helped my mobility but did nothing for pain reduction. My physical therapist asked me my goals for physical therapy and I told him I want to be able to eat a big mac and steak again. I suceeded in neither of these. The night bite guard that I had been wearing prior to surgery no longer fit right but I was told to keep wearing it. I continued to complain about the bite guard not fitting right and making my bite seem even more off. My OS finally told me to discontinue using it. WOW what a difference this has made. Two nights not wearing it and my bite almost felt normal again and my pain was reduced in half.

My OS and I have concluded that there is nothing else he can do for me and I am seeing a new doctor in October. He is a renowned specialist in TMJ. I am looking foward to meeting with him and hope he can help me. My new found pain reduction has changed my life and I almost feel normal again. The pain is controllable with medication when before taking vicoden was like taking an M&M. I hope I can return to school next January and start being the mother I have not been for almost a year. That is my story.

I hope to God this is just a “blip” in my life. But judging from reading tons of info on TMJ it sounds like it will be a life long struggle with good and bad periods.

I am updating my story, May 6, 2005. Unfortunately, this turned out not to be just a blip in my life. The new doctor turned out to be a worse nightmare than I could have imagined. He yanked me off of my meds and told me to take high doses of ibuprofen. That landed me in the hospital with dehydration from ripping my stomach to shreads and my bowels to water. Needless to say, I did not return to him. I was planning a trip to Boston to visit my family, my dad had surgery for tongue cancer and my grandfather had just passed away. I decided to see a doctor up there. I went to a doctor my dad had seen for his tongue cancer. He is a jaw reconstruction specialist. Before he would see me, he set up an MRI and a CAT scan and an appointment with a pain management specialist. When I got there, I had the scans and met with the pain management specialist. What a wonderful and caring doc! I had just about given up hope of ever finding a caring doc. After the scans I met with the surgeon to be evaluated for total joint replacement.

The surgeon did not feel I was a candidate for it - yet. I did have a chunk missing out of my bone and had scar tissue in the joint from previous surgeries. He said if he did surgery on me, he wanted it to be the last one and he wanted it to improve my pain and function and not make things worse.

So at this point, I have no future surgeries looming. I am being treated for pain only and had a new splint made to help avoid any further damage to the joint. It is not going to fix me. Nothing is going to fix me. I know that and the docs know that.

I have to travel to Boston once a month to see my doctor for now. But it worth the hassle.

Update, May 2008:  Amy contacted me to let me know that she has tapered off of all her opiate medications.  She says that she feels no worse than she did on them, and is really very pleased with the results.  She is working part-time as well as taking care of her kids, and feels very functional.  Congratulations, Amy!

If you have any questions for Amy, please either post a comment, or visit our questions page.

How to Get Help When You Are in Pain

If you accept the standard of care that medical providers deem appropriate for you, you are not necessarily going to get the standard of care that you deserve. You HAVE to be more vocal. Medical care now is a partnership between medical professional and patient. Gone are the days when treatment was dictated to the patient and the patient had no other options. Hospital personnel and many medical professionals are overworked, underpaid, understaffed, and in many cases, inexperienced. That is why YOU as the patient, owe it to yourself to be as informed as possible BEFORE you have any procedures done or go in for any type of medical treatment. It is our responsibility as patients to take advantage of the vast resources that we have available at our fingertips.
For most patients, pain management is something that is not always adequately addressed.

• Patients are afraid to admit that they need help
• Patients are afraid to ask for medication
• Doctors are afraid to prescribe because of restrictions placed on them by the government
• Doctor/Patient relationships are short lived because of referrals, so doctors do not know and/or trust the patient enough to prescribe pain medication
• Lack of knowledge by the patient about what is available.

Who Can Treat Pain?

There are pain management specialists who are board certified in pain management. Who you choose to manage your pain will depend on your specific needs. For example, a chronic migraine patient might choose a neurologist to treat his or her pain because the neurologist has more experience dealing with headache patients. Once you choose a pain management specialist, it is usually expected of you to only see that physician for your pain needs. Sometimes the specialist will have you sign a contract, which states that you will only take pain medication from him or her and will consent to random urine testing, pill counts, or other measures that protect both you and the doctor. Some physicians will write you a prescription for emergency room visits that dictate what you should be given in the event of an emergency, what emergency room you should go to, and what medications you are on. This precaution makes emergency room visits much easier.

How is Pain Treated?

Pain management can be trial and error. Medications can be tried for a variety of different symptoms. Most patients find that a combination of different drugs is the most effective therapy. Some of the different types of medications used for pain management are:

• Anti-inflammatories - These medications help reduce swelling and pain. Examples include Relafen, Mobic, Celebrex, Ibuprofen, and Naproxen.
• Muscle Relaxants - These medications help to reduce muscle spasms and tightness. Examples include Soma, Zanaflex, Flexeril, Baclofen, and Skelaxin.
• Nerve Pain Medications - These help to reduce pain due to nerve damage and can also be used to lower pain as a whole. Examples include Neurontin, Topamax, Keppra, and Lyrica.
• Anti-Anxiety Medications - These help to reduce anxiety due to pain. Examples include Valium, Klonipin, Ativan, and Xanax.
• Anti-Depressants - Are used to help with depression due to pain as well as reduce pain in general. Examples include Lexapro, Wellbutrin, Paxil, Nortriptalyine, Elavil, and Prozac.

Opiates

Opiates are used to reduce moderate to severe pain. They are agents that bind to opioid receptors, found in the central nervous system. They are most commonly used for moderate to severe pain.
Short acting opiates, such as Vicodin, Lortab, and Percocet are used for acute or break through pain and are usually prescribed for short periods of time. However, if a patient is taking an appropriate amount, the doctor may choose to keep him or her on the medication for longer periods.
If a patient has been in pain for longer than 6 months, is anticipated to have chronic pain for a long a period of time, or their current short acting medication is inadequate, they can be prescribed long acting opiates. Long acting opiates are slowly released into the system over a period of hours or days depending on the particular medication. Some examples are Oxycontin, Duragesic (Fentanyl) patches, MS Contin, and Methadone. These medications can not be stopped abruptly. They need to be slowly tapered off to avoid discomfort (withdrawal) and side effects. Dosing instructions are for your protection and need to followed very carefully to avoid any potential problems.
In the recent years, there has been a lot said in the media regarding some of the medications used to treat chronic pain since they can be habit forming. There has been and still are many misconceptions concerning addiction, dependence and tolerance with these medications, as well as a doctor’s hesitance or willingness to prescribe them. If a chronic pain patient follows their doctors orders, keeps their medications out of the reach of others (this may involve keeping them under lock and key), signs a pain contract, and is compliant with other precautionary measures, there usually is no danger in taking opiates for the treatment of non-cancer chronic pain.
However, as with any medical treatment, it is best to be knowledgeable about terminology and aware of possible issues that could present. There is an enormous difference between addiction and dependence. They are NOT the same thing.
The dictionary describes addiction as the “compulsive physiological and psychological need for a habit-forming substance.” Dependence and tolerance are also present. And dependence is described as a “physical dependence,” where the body will develop withdrawal symptoms upon stopping the substance. Tolerance is defined as “diminution in the response to a drug after prolonged use.” Many chronic pain patients experience a time when their medication does not work as effectively and they must increase the dosage of the medication or switch all together to continue receiving pain relief. Many chronic pain patients are afraid of addiction, when that seldomly occurs. Less than 1% of chronic pain patients end up addicted to pain medication. Prior drug abuse tends to increase ones chances to becoming addicted to pain medication.

It is important for chronic patients to see physicians who are experienced in treating with opioids. Some doctors are not educated about the differences between addiction, dependence, tolerance and pseudo-addiction. Pseudo-addiction is when a patient displays all the warning signs and symptoms of addiction, however, is actually just under treated and needs their pain managed better.

It is also very important to educate family and friends about the differences explained above. This way they will understand your treatment and not become suspicious or difficult because of your pain management. Taking your family with you to the doctor is encouraged so that they can ask questions and listen to your treatment plan.

Other Types of Treatment

Many patients find that with a chronic pain condition, a multi-disciplinary team approach works best, meaning that one would see different physicians and have different treatment for many of their symptoms. Some of the other types of treatment include:

• Physical Therapy
• Trigger Point Injections
• Massage Therapy
• Acupuncture
• Chiropractic
• Counseling alone or with family
• Support Groups
• Other injections such as facet blocks, nerve blocks, etc
• Biofeedback, relaxation therapies, stress management
• Lifestyle changes

Chronic pain can be caused by a myriad of different problems, such as arthritis, back pain, migraines, abdominal pain, bowel disorders, pelvic pain, fibromyalgia, reflex sympathetic dystrophy, lupus (and other systemic autoimmune/connective tissue conditions), multiple sclerosis, along with TMJ disorder, facial pain, myofascial pain, and other related conditions.
Medications also work for different conditions, and can be used for different problems or symptoms than what is listed above.

If you have questions about your pain, treatment, medication, side effects, dosing, etc please contact your pharmacist or physician.

Chronic pain affects more than 75 million people in the United States and costs over 100 billion dollars per year. It is an important issue that often overlooked and under-addressed by both patient and doctor. Hopefully with advent of the internet and more knowledgeable patients & physicians, less people will suffer needlessly in pain.

If you have any questions about pain management for TMJ disorder or other painful conditions (such as back pain, fibromyalgia, chronic fatigue syndrome, migraines, atypical facial pain, myofascial pain, reflex sympathetic dystrophy - RSD, chronic regional pain syndrome - CRPS, etc) the questions page on the website lets you know how to submit questions that will be featured on the TMJ Friends blog.  For support from other patients, visit our message board.

Meanwhile, take care of yourself and don’t forget to get a good night’s rest, try to eat nutritious foods, and exercise if you can.